An Actors Guardian Angel; Calling All ALS Angels!

Nathan Nesbitt is organizing this fundraiser on behalf of John Kirby.

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JOHN KIRBY is One of The Most beloved, revered, adored & celebrated humans on earth!!! As the premier Acting Coach in Hollywood for over 50 years, he has transformed thousands upon thousands of actors; many into household names. More than his immeasurable talent, he is a true lover of people, an encourager & a giver! His golden reputation and keen sensibility have gleamed him the title of: “An Actor’s Guardian Angel” by established colleagues in The Film Industry. John's circle of influence is not even quantifiable!! Simply put, John Kirby is A National Treasure https://www.thejohnkirbystudio.com

After watching the video above, you will learn about the devastating news of a neuromuscular disorder diagnosis. We are in complete shock & Our hearts are crushed. We also know that John has many Angels surrounding him during this challenging time! *Our goal is to get John the resources he needs to overcome this challenging disease. Ultimately getting him back to coaching & teaching his amazing acting classes every week! The John Kirby Studio is a safe-haven, a 2nd home for Actors to explore their craft in a sacred space under the guidance of a loving, insightful, passionate & brilliant Acting Teacher. His actors/students miss him deeply.

WE are confident that this goal is possible & are calling all Angels to his aid! Please join us on our Crusade to help our beloved Johnny conquer Lou Gehrig's Disease!....❤️‍

Many factors make ALS [amyotrophic lateral sclerosis] an incredibly expensive disease and journey, both for the individual diagnosed and the family members around them. The average cost of living with ALS is $150-$250K annually. Navigating through insurance systems can be a bureaucratic nightmare!

The most costly expense is 24/7 live-in Caregiver support which John requires. The average cost for a paid Caregiver is $2,100-$3,500 per week. (NOT covered by Insurance)

Doing things that might feel like routine parts of our days can require a lot of devices and human resources to accomplish the same tasks. For example, to get to a medical appointment, an individual might need a special van and someone to drive that van, to be able to take them in whatever wheelchair or assisted walking device they may

have.

Some might have a care partner who’s able to handle most of their day-to-day needs, but in other situations, they might need additional support. There are many costs that can be uncovered throughout this journey. It will be highly variable from individual to individual, but it’s an expensive disease.

The power wheelchair can be an extremely expensive. Individuals might have to make modifications to their home, handrails or elevated toilet seats. Often these are done based on the advice of someone who can help—an occupational therapy [OT] or a physical therapy [PT]—thinking about what support an individual needs based on their symptoms and limitations.

There are also costs with things like needing a 24/7 ventilator called a TRILOGY machine/BiPap. Also, a cough assist device. (DME)

Specialty medications come with a hefty price tag. Many Not covered by Insurance RX coverage.

There are also the costs of the medical care itself:

The routine follow-up visits required with the multidisciplinary team, whether that’s a neurologist, a pulmonologist, PT, OT, speech, nutrition, genetics, or a mental health therapist to help cope with some of the depression that they might be experiencing.

These costs can add up both in terms of financial constraints and time.

We’re very excited about many of the therapies that are approved or gaining approval, but a lot of times these therapies are incredibly expensive. They might not be covered by insurance, and the out-of-pocket costs can be insurmountable for some families. Families may be forced to decide between whether they want to go bankrupt over a medication vs not take the medication at all. It’s an incredibly stressful component of care for some as well. -Laynie Dratch, ScM, CGC.

Jennifer Roggenbuck, MS, LGC: The factors that drive ALS costs are numerous, and individuals with ALS have a lot of medical and other needs that we try to address. That includes the cost of medications. We have some approved medications to treat the various aspects of ALS, which includes mobility assistance. In many cases, individuals with ALS need a wheelchair at some point; those machines are quite costly. We often work to develop communication devices, and that technology is also expensive. Some individuals with ALS need home health care or in-house therapy to maintain quality of life. All those things are quite expensive, and those are costs incurred by the patient. Family members often are impacted too because they have to take time off work or maybe even quit their jobs to care for their family member with ALS. The economic impacts are wide ranging. These costs accumulate over the years.…